Plinth Blog Special Needs Parenting

17Feb/100

Blast from the Past

I haven't updated in a while - no surprise.  Here's a blast from the past - an email I wrote some 7 years ago, six days after Alice was born.

Alice is off her glucose drip and is now breathing without her nasal canula most of the time.  She occasionally needs it during feeding because in her haste to inhale food, she forgets to breathe.

She is feeding well, and as a tribute to David Brandon, I'm required to pass on a story about bodily fluids.  While she was finishing up a bottle of breast milk in my lap, she proceeded to poo with volcanic force, coating my thighs.  Until the staff got a look at me, they
were reluctant to part with a pair of scrubs.  One look and they understood.  Alice is probably the only person who could spray me with her wastes and cause me to laugh.

On the bad news front, we got test results that we have dreaded since day one.  In every cell they tested, Alice has a duplicate 21st chromosome.  She has Down syndrome.  We had no idea that this was going to be.  We had declined the "triple screen" because
is doesn't give a reliable positive and a friend of Evie's had been on pins and needles for months waiting to find out.  We declined amnio since the probability of complications due to amnio are higher than birth defects in low-risk couples.

We are both very sad, ashamed, crushed, and broken-hearted. Both Evie and I are dreamers by nature and we've just lost a number of dreams and weren't ready to start making new ones. We will be, but we need time to mourn the lost ones.

We've talked a great deal and we do not intend to try and hide this from the world, least of all our friends.  We also believe that having a healthy 'I' will allow me/Evie to have a strong 'us' as a couple and therefore a strong 'us' as a family.

Alice is healing us.  She is a happy, adorable little baby.  The world goes away when she's in our arms.  We can't conceive that there's anything "wrong" with her. 

Even when she paints us.
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